Research recruitment through US central cancer registries: balancing privacy and scientific issues

Abstract

Cancer registries are a valuable resource for recruiting participants for public health-oriented research, although such recruitment raises potentially competing concerns about patient privacy and participant accrual. We surveyed US central cancer registries about their policies for research contact with patients, and results showed substantial variation. The strategy used most frequently (37.5% of those that allowed patient contact), which was among the least restrictive, was for investigators to notify patients' physicians and then contact patients with an opt-out approach. The most restrictive strategy was for registry staff to obtain physician permission and contact patients with an opt-in approach. Population-based studies enhance cancer control efforts, and registry policies can affect researchers' ability to conduct such studies. Further discussion about balanced recruitment approaches that protect patient privacy and encourage beneficial research is needed.

FIGURE 1—

Models for research recruitment through cancer registries Note. This figure depicts recruitment models from the 33 (78.6%) registries through which research contact with patients was allowed; 9 (21.4%) registries did not allow such contact. The number below each “branch” is the number of registries in that category. The percentage above each branch is the proportion of registries from the immediately preceding node that were in that category. The percentages for the set of branches emanating from each node may not total 100% because of missing information. The percentages at the far right are the proportion of registries that used the model defined by following that branch back to the far left of the diagram.